Saturday, December 31, 2005

 

The Year My Dog Got Me Out of the House

2005 was a year of challenges for me--both physically and mentally. I thought some of these cycles would never end! Now that I look back I realize that some good came from them.

One period stands out in my mind. In the first months of the year, I was faced with the fact that my dog was getting older. Before the new year, she had become violently ill for a 48 hour period. After several tests the conclusion was "we don't know". She got better, but then went through a bout with diarrhea. And, to top it off, she began having urinary problems. Medication solved the later problem. But, the digestive disorders meant only one thing--a change in diet. Her favorite special treats were taken away and she got no more people food (though she never got alot).

I felt so sorry for her! I had to do something to make it up to her. My father took her for 4 walks a week. As I was supposed to walk each day to keep my body moving, I started taking her for a short walk at lunch time. When the weather improved around June, I added another walk after dinner. My mobility problems didn't lend themselves to long walks, but on a good day I could do 10 minutes at a time. On a bad day, we went the length of the street and back.

At first I dreaded these walks. I went whether I felt good or not. Now I look forward to them and so does Sierra. I get some fresh air and Sierra gets to smell every leaf and twig along the way. Did you know that I had friendly neighbors??? I had spent so much time trapped in my house with arthritis that I'd forgotten.

It's good to get outside even for 10 minutes at a time, say hello to a neighbor, see the blue sky, and feel the sun on my face. I guess I can thank Sierra for getting me outside the house and back into my neighborhood.

Friday, December 30, 2005

 

Praftfall Queen

Since arthritis has taken over my feet, I've become so clumsy. Walking across the room can be a challenge. Watch out for that dog toy! Quick turn left! I have found myself face first on the floor more times in the last couple of years than a drunk.

I can be incredibly creative with my pratfalls. One day, I was talking to my nephew and walking across the living room. My dog was laying on the carpet. Her leg poked out into the air. The fatty tissue lump on that leg prevents her from laying flat. Somehow as I raised my foot, my shoe (an open front surgery shoe) got caught on her outstretched paw. I flew forward landing face first on the couch. My side hurt so much from laughter--and my nephew missed it! Thank God my sister wasn't there. She'd still be laughing.

Not all my falls are so spectacular. But, they seem to come more often as I lose more cartilage and flexibility. A blanket hanging over the edge of a bed can be treacherous. One false move and I'm caught in it's snare.

It's a good thing that my family carries a gene that enduces laughter when someone falls. Maybe we are reincarnated from old vaudeville actors! If I didn't laugh so hard after I pick myself up, I might actually think I've hurt myself. There is a serious side. I could break something (which would probably make my family laugh even more!) I'm happy that the only thing I break is my funny bone.

 

When the Holidays Are Over

For four glorious weeks, I don't have to dust because all the surfaces are decorated. Once we get the tree, I only have to vacuum half the living room. You can't even see into the cobwebbed corners, so no need to get out the dust mop. Yep! Holiday decorating does an arthritic body good.


But, once the holidays are over, the decorations must come down. Oh, I can put it off as long as possible. Usually by January 1st, I'm pretty tired of looking at snow people (or are they dust people by that point?) Then out comes the many boxes and bins. It's really a task to put it all away. Disassembling the tree is the most difficult part. Climbing up and down the step ladder really is painful for my arthritic feet. I try to do it in parts. 5 ornaments here and there, until they are all off. I do eventually get it all done.


Once everything is packed away, I usually gasp. Did the dust really get that thick? And, what's that new creature living over the television stand? When it gets that bad, I know it's time to start cleaning again. As much as I hate house work, even I can only go so long! If I can write my name in the coffee table, then it's probably been too long.


While I may dread all the work that goes into the holidays, I count my blessings. From Thanksgiving to New Years, I can blissfully forget about cleaning and no one will say one word about it! Now that it's all over, it's back to dusting again.


Thursday, December 29, 2005

 

Weather is a Pain

Where I live the winters are fairly mild. It never snows. We get alot of rain and fog though. The temperatures usually are in the high 40s/low 50s during the day and can drop to the low 30s at night. Yet, my arthritis still affected by these less dramatic weather changes.

As the weather gets rainier, I get creakier. I usually start to notice the change sometime at the beginning of December. I have more trouble walking as my feet seem to be constantly sore. Joints that don't normally bother me begin acting up. I never have trouble with my hips, but on cold nights, they make it uncomfortable to sleep. My hands start to swell off and on as well.

This pattern will continue for many weeks. I have to use hot pepper lotion on my feet more and I am a little less mobile. I used to make the mistake of cutting down on exercise as as the soreness increased. I've found that I will be sore anyway. Unless it's an unusually painful day or a joint is really sensitive I exercise as much as I can.

While this pattern is painful, the worse is yet to come. Around February, our weather will swing violently between Winter and Spring. We can have days of 70-75 degrees followed by a week of fog. This is when I am at my worse. It's as if my body does not know what season to be. I get flu like symptoms, swelling, etc., mixed with really good days. It's hard to adapt because I never know which body I will have.

Finally, Spring settles in. I feel a collective sigh from my joints. One day I will notice that I can pick up my pen without tossing it across the room. When I take my 15 minute walk, my ankles no longer feel like they are held by cement. Throughout out Spring and Summer I do really well. The warmer the day, the better I feel.

And, then it's Autumn. Slowly but surely the pattern begins again. At least I know that in between the rough seasons, there are some really enjoyable weeks.


Friday, December 23, 2005

 

Don't Over Do It!

How many times has your doctor told you not to push it? How about a helpful friend or relative who keeps an eagle eye on you? Though they mean well, these constant reminders of your infirmary can make you afraid to move. Underdoing it can be as damaging as overdoing it.

Everyone with chronic illness or disabilities has limitation. No doubt about it! Restricting movement can be physically and emotionally hazardous. Your joints and muscles can weaken and become more painful through lack of movement. Your mental state will suffer as well.

This doesn't mean you should rush off to join a marathon, go rollerblading, paint the house, or give piggy back rides to your grandkids. It does mean that you need to test your boundaries a bit. You can be paralyzed by not moving as much as you can be racked with pain for moving too much.

Think about your typical day. Is it spent parked in front of the tv until the kids gets home? If so, you need to get moving! Start simple. Bring some paperwork or a craft project over to the couch. You can do busy work in a seated position. Instead of watching tv, go outside to get some fresh air. You can do some reading, watch the birds, or walk around the backyard a couple of times. Most things you can do indoors you can do outdoors. If you can sit on the couch, can't you sit on the backyard swing?

This is a case where the more you do, the more you can do. You will always be faced with physical barriers. By making a couple of simple changes in your day, you'll help your physical and mental outlook. A little gentle movement and a breath of fresh air does a person good!

Wednesday, December 21, 2005

 

When the Holidays Are Over

I really enjoy the holidays. I like the decorations, the tree, the ornaments, and the presents. I especially like the fact that while all the decorations are out, I don't have to clean as hard. That's a bonus for my chronic pain racked body!

For four glorious weeks, I don't have to dust because all the surfaces are decorated. Once we get the tree, I only have to vacuum half the living room. You can't even see into the cobwebbed corners, so no need to get out the dust mop. Yep! Holiday decorating does an arthritic body good.

But, once the holidays are over, the decorations must come down. Oh, I can put it off as long as possible. Usually by January 1st, I'm pretty tired of looking at snow people (or are they dust people by that point?) Then out comes the many boxes and bins. It's really a task to put it all away. Disassembling the tree is the most difficult part. Climbing up and down the step ladder really is painful for my arthritic feet. I try to do it in parts. 5 ornaments here and there, until they are all off. I do eventually get it all done.

Once everything is packed away, I usually gasp. Did the dust really get that thick? And, what's that new creature living over the television stand? When it gets that bad, I know it's time to start cleaning again. As much as I hate house work, even I can only go so long! If I can write my name in the coffee table, then it's probably been too long.

While I may dread all the work that goes into the holidays, I count my blessings. From Thanksgiving to New Years, I can blissfully forget about cleaning and no one will say one word about it! Now that it's all over, it's back to dusting again.

Sunday, December 18, 2005

 

Lamenting the Loss of My Skateboard Career

How many times has your doctor told you not to push it? How about a helpful friend or relative who keeps an eagle eye on you? Though they mean well, these constant reminders of your infirmary can make you afraid to move. Underdoing it can be as damaging as overdoing it.

Everyone with chronic illness or disabilities has limitation. No doubt about it! Restricting movement can be physically and emotionally hazardous. Your joints and muscles can weaken and become more painful through lack of movement. Your mental state will suffer as well.

This doesn't mean you should rush off to join a marathon, go rollerblading, paint the house, or give piggy back rides to your grandkids. It does mean that you need to test your boundaries a bit. You can be paralyzed by not moving as much as you can be racked with pain for moving too much.

Think about your typical day. Is it spent parked in front of the tv until the kids gets home? If so, you need to get moving! Start simple. Bring some paperwork or a craft project over to the couch. You can do busy work in a seated position. Instead of watching tv, go outside to get some fresh air. You can do some reading, watch the birds, or walk around the backyard a couple of times. Most things you can do indoors you can do outdoors. If you can sit on the couch, can't you sit on the backyard swing?

This is a case where the more you do, the more you can do. You will always be faced with physical barriers. By making a couple of simple changes in your day, you'll help your physical and mental outlook. A little gentle movement and a breath of fresh air does a person good!

Saturday, December 17, 2005

 

Old Broken Foot Lady

My seven-year-old nephew used to mock my walking style. He would either grab my crutch or improvise his "old lady" limping routine and say "Please, help the old broken foot lady". I used to laugh so hard! He really did a good impersonation, though I was hardly an old lady!When I first started experiencing problems walking and standing, I was concerned as to how my nieces and nephew would respond. I spend alot of times with these kids. It's not easy for adults to deal with people with disabilities, so I was very worried that the kids would feel awkward in my presence--maybe even afraid. I was determined to do everything I could to avoid that.

It was important that they understood my limitations. There were many things I could not do any more. A game of tag was out of the questions and when we played games I had to be sitting. Still, I was the same person as before with the same sense of humor, though perhaps moodier than usual. They could still mess with me and my disability was not off limits.

The first thing I did was let them see all my new equipment. The items I saw as reminders of my loss of ability were items of wonderment to them. They'd try on my orthotics, braces, and play with my exercise bands. They used the crutches more than I did! To them each item had it's own special magic. They thought I was lucky to have all this amazing stuff! I thought all of it was a nuisance.

We had many conversations about what was happening in my body. I showed them the x-rays of my feet and the plaster casts for the orthotics. I wanted them to know what it meant for my to have arthritis. I had to answer alot of questions like "will your feet always be like that?", "why are you carrying your x-rays around with you?", "would you rather wear two matching shoes if you could?" All of these questions were important and I answered all of them as best I could.
They know that I am their Aunt and they are still big parts of my life. I may not always feel up to a visit or be ready for everything they suggest, but I enjoy their company nonetheless. My illness did not change that.

With adults it's seems more complicated. They don't know what to say and they're afraid of saying the wrong thing, so they say nothing at all. That's the funny thing about kids. They may feel awkward and not know what to do, but they can be pretty blunt. If they have questions, they ask them. And, if you do a good enough job with the answers, they will accept you all the same.

Friday, December 16, 2005

 

One Blue Shoe

When my left food refused to fit into a regular shoe, my doctor gave me a surgical shoe. You've seen them. They are blue with a open toe. The hope was that it would relieve the pain and swelling in my foot.
At first I was self conscious about that shoe. You couldn't miss it. It sort of stuck out like a sore thumb. Over time, I forgot it was there. Although others did their best to not let me forget it.

You should have seen the stares I got. One surgical shoe, one tennis shoe. This really threw people off. They didn't know if they should ask me about my accident or whisper on the sly that I came to work with two different shoes on. There were those who felt the need to say something. Usually it was "It's not really that bad looking of a shoe. Almost looks normal." Oh please! If you had your choice, which would you pick--a matching set or the blue shoe? Don't take too long to answer.

Eventually, I had to get one for my right foot when it started to act up. Now I have a matching set. Interestingly enough, once I got two blue shoes less strangers asked me about "my accident". I guess they figured I was wearing these shoes by choice!

I guess it could be worse. I might have had to buy sensible shoes like my Grandma wore. The surgical shoes are a good compromise. Let's face it, comfort comes first. Observing other folks discomfort at your oddness is just an added bonus.

Thursday, December 15, 2005

 

Surviving the Weekend with My Nephew

I've just spent two full days with my 13 year old nephew. I am utterly and completely exhausted! Don't get me wrong. I really enjoy spending time with him, but I sure end up a zombie after he's gone.One of the most challenging aspects of chronic illness is dealing with fatigue. I know that my stamina is nowhere near what it was 7 or so years ago. I'm only 40, so technically I shouldn't have too many problems. My illness seems to let all my energy reserves seep out. On a regular day, I'm yawning about 3:30 (and I don't get up until 9 or 10). If I don't take a relaxation break, I find myself nodding off like an old lady in a rest home. It's really difficult to deal with especially when one is used to getting everything they need done in a typical day.

When my nieces or nephew come to stay, it can be a challenge staying alert. I do pretty good for a few hours. By the end of the day I am exhausted and fairly cranky. I start to get that "But, I don't want to!" attitude. In cases where they stay over night, I am okay until they leave. Then I fall into a stupor. The next day I am useless. The exhaustion plagues me for two to three days afterward.

It's been difficult adapting to this "slow down" mode. When the kids were younger, I was always in the middle of their games. I'd be chasing after them in tag, playing hide and seek, challenging them at board games, getting silly, singing songs, and so forth. I could go all day. Their energy would be infections. Now, I'm doddering along. I have to take my breaks in between sets. There's no more tag for me because my feet won't allow it.

I could spend my days sitting around the house. I could be one of those relatives who never gets involved. "Don't wake Auntie Mel. You know she's ill." But, I don't want to be! I enjoy having my nieces and nephew over. I can't have them every day, but I can sure have them for a visit. It's true that we've had to change our style of play, but that doesn't mean we can't play at all. Even though I'm knocked out afterwards, I'd say it's time well spent! Anyone who has a chronic illness has to have a break from it. Children are a wonderful pick me up.
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Mel recommends:
Celebrate Life: New Attitudes for Living with Chronic Illness is an excellent book for those suffering from chronic disease who want to gain back control of their life. The author covers the many emotional and physical stages she went through after her diagnosis with Lupus. I love this book and have reread parts as a reminder that life has to move forward. You can order this book through amazon.com.

Sunday, December 11, 2005

 

We Can't Believe You Can Walk

When I visited the doctors four years ago because of increasing pain, I felt a bit like a carnival exhibit. Come one! Come all! See the woman with no cartilage in her feet! She can walk and stand without the help of a surgeon or medical technology. A few months before that visit, I was feeling pretty darn good. My rheumatologist changed my medication. The side affects of sulfa drugs went away. I was no longer plagued with hot flashes and nausea. Then my left foot started acting weird. That's when I realized with chronic illness it's always something.

I had gained back some mobility in the early years of diagnosis with physical therapy. Just as I was feeling alot better, I began to lose that mobility. I was jolted with pain in my left foot every time I stood up. The pain would last a minute or two. If I waited, it passed. It would also whack me when I was walking. Those were usually small jolts of pain. Sometimes the pain was so bad that my foot froze up. I was often trapped in the bathroom or in a chair until I could put pressure on my foot again. Then, there was this peculiar popping sensation with almost every step. This wasn't your typical knuckle cracking sensation. It was more like two bones getting stuck and then freeing themselves.

I went to the podiatrist. What a medical phenomena I became! My x-rays were passed around the office. The podiatrists did alot of head scratching. Oh, they knew exactly what was wrong, but they couldn't figure out how I was walking with such badly damaged feet!

I had acquired a new diagnosis. I had so much cartilage loss in my left foot that the joints were now rubbing together. The popping sensation was the joints getting stuck and then popping back into place. The jolts of pain were caused my weakened muscles around the joints. The muscles were trying to compensate for the lack of cartilage, but they spasmed in the process. Every time I put pressure on my foot, the muscles tried to help out. They weren't doing a very good job of it!

There was talk of surgery. They could insert pins and fuse my joints together. The surgery involves being in a non-weight bearing cast for several weeks. After which, the person has to go through extensive physical therapy. Basically, they need to relearn walking as the joints no longer are formed the natural way. It has a bad habit of affecting the other joints resulting in more surgery. There was no guarantee that it would relieve the pain. The recommendation was use surgery only as a last option. A consultation with my general practitioner proved much the same.

I was fitted for new orthotics made in a more severe angle to keep my feet in place. I was also told to wear my foot braces every day. There wasn't a whole lot they could do except to minimize the movement in order to minimize the pain. As my feet became adapted to the braces, I would lose some of the flexibility and strength. But, the hope was that I would be able to move without to much discomfort.

It's now been about three years. And, I'm still walking! I should quantify that though. I am not doing marathons, nor can I really walk much. Walking around a store practically kills my feet. But, I can get around the house. I've also been able to do a little stretching to strengthen my feet and ankles. At least, I can stand up and know that most of the time my feet will support me. I still get zinged a couple of times a day but the muscles bounce back a little quicker now.

I don't know how long this will last. The problem has spread to my right foot, so I no longer have one good foot. In time I may need that surgery. For now, I'll do whatever I can to stay on my own two feet.

Friday, December 09, 2005

 

Autumn Dread

Tell me why I don't like Autumn...Yes, I know, that's not the way the Boomtown Rats song goes. Still, since I've had arthritis, I look on Autumn with a certain sense of dread.

It's not Autumn per se. It's a fine time of year. The leaves changing color, Indian Summer weather, and a crispness in the air are all very enjoyable.

What I don't like is where Autumn leads. The weather slowly but surely shifts. The fog rolls in more often and rain is on the horizon. Autumn always leads to Winter and that's the time of year my arthritis worsens. As the seasons shift, my joints get creakier. My movement stiffens and suddenly I am an 80 year old woman in a 41 year old body. That shift can be a little depressing.

As the weather changes, so does the length of the days. It's dark in the morning and it's dark by 5pm. The shorter days are cooler and I don't feel like being outside. I begin to sense all those hours I'll be inside because walking around outside becomes more difficult. The sliding back door will be shut because of the chill air. That feeling can be a little suffocating and claustrophobic.

I know that as the days get shorter and colder, the agility in my feet lessens, and I'll be looking at these white walls a heck of a lot more.

And, then I start wishing for Spring. Glorious spring with it's blue skies and sunny days. Days when I can swing open the doors wide, stand in my backyard with my dog, or take a brief walk out front.

But, those days are a long way off from October. Now I sit with my dread wishing Autumn would take a hike and Summer would slip in the back door. I don't have any power over the seasons though, so I guess I'll have to keep busy and wait for Spring.


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